Fetal Cardiac Intervention Program Makes a Difference

The Lindbergs welcome baby Chase to their family. From left, Jessica, Chase, Erik and Ethan.

Seven-year-old Ethan Lindberg couldn’t wait to meet his new baby brother last month. As he was wheeled from his room at Children’s Hospital to BWH’s Connors Center for Women and Newborns, he told everyone he encountered, “I’m going to see my new baby brother!”

When he arrived, he gently caressed the baby’s face and kissed his forehead.

This magical moment wouldn’t have taken place if not for a procedure Ethan underwent in 2005 before he was born. He was diagnosed in utero with critical aortic stenosis progressing to hypoplastic left heart syndrome (HLHS), a rare congenital heart defect that prevents the left ventricle from providing enough blood flow to the body.

Ethan’s parents, Jessica and Erik Lindberg of Illinois, sought help from BWH and Children’s Hospital, which operate a joint Fetal Cardiac Intervention Program. While he was still in the womb, physicians were able to open up his pinched aortic valve.

“At that time, this procedure wasn’t well known, but we wanted to do everything possible to save Ethan,” said Erik Lindberg.

Without the intervention, babies diagnosed with HLHS have a 70 percent chance of survival, require three heart surgeries prior to age 3 and may eventually need a heart transplant.
Last year, the Fetal Cardiac Intervention Program marked its 10th anniversary of helping families like the Lindbergs.

“We have the biggest program in the world,” said Ginny Silva, FNP, RCN, coordinator of fetal therapy and clinical educator for Labor and Delivery. “Over the last decade, we have performed 140 procedures on patients from across the country.”

The program was established in 2001, under the leadership of BWH’s Director of Maternal Fetal Medicine and Reproductive Genetics Louise Wilkins-Haug, MD, PhD, and Director of Ultrasound Carol Benson, MD, and Children’s Hospital cardiologists.

For the Lindbergs, who reside in the Chicago area, the fetal cardiac intervention was just the first step in helping Ethan. Over the last few years, they have traveled between Chicago and Boston so Ethan could
undergo several surgeries at Children’s Hospital to ensure scar tissue doesn’t block his heart’s ventricle.

While he recovered from his latest surgery, his mother delivered his new baby brother, Chase, at BWH. Ethan is also a big brother to 3-year-old Blake.

“It was priceless to see Ethan with his new brother, and it was important that he came to visit and celebrate this special moment,” said Silva. “The Lindbergs are a remarkable family, and they inspire us to keep going.”

The Lindbergs are thankful for the chance that the intervention gave Ethan. To support other families in a similar situation, they helped Brita and Dan Dietzel launch the Ellianna Grace Foundation, which provides financial, logistical and emotional support to families who require a fetal cardiac intervention. The foundation was named in memory of the Dietzels’ daughter, Ellianna Grace, who underwent the fetal cardiac intervention, but passed away in 2006 from an accident-related injury.

“We are eternally grateful for Ethan and for this journey,” said Jessica Lindberg. “We are better people because our life has been blessed by our special boy.”